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Breastfeeding & Rheumatoid Arthritis

Aug22

by

Amalah,

First of all, I love your advice column – and so does my husband! You were the one who convinced us BOTH that cloth diapers were not actually so scary. And pretty much whenever we have an issue we are trying to figure out my husband asks “what does Alphamom have to say about it?” So we’re both hoping you’ll have something to say about this.

I have rheumatoid arthritis (RA), which is an autoimmune disease that causes extreme joint pain and fatigue. RA has made my path to motherhood a rocky one. I had to stop taking all the medications that were controlling the disease for six months before it was even safe to try to conceive. Then we had to “try” while I was also dealing with totally untreated RA (Every joint in my body hurts! Yay! Let’s get busy!) I was lucky enough to experience some remission during my second trimester, but during my third (which we already know is SO COMFORTABLE) I had major joint pain in my knees, hips, and hands. But it was all totally worth it because now we have a beautiful baby boy who is six weeks old.

Six weeks looks like it is also going to be about the end of my birth-induced remission, because that familiar joint pain is starting to return to my toes, fingers, and wrists. I know that eventually (soon?) I’m going to reach a point where all the wrist braces and Epsom salt soaks in the world are not going to be enough, and I won’t physically be able to care for my baby without medicine – medicine that is, unfortunately, not compatible with breastfeeding.

I am extremely grateful that my son and I have already had six very successful (and wonderful) weeks of breastfeeding. I am really, really hoping that we will be able to manage a few more, but I’ve known all along that we would eventually reach a point where it would be better for both of us to stop. I’ve been preparing by pumping and freezing as much extra milk as possible so that when the time comes I will know that I have done everything in my power to provide the maximum amount of breast milk to my son.

But what I find I’m not prepared for is the emotional impact this transition is going to have on me. The other day we did a couple of bottle feelings so that daddy could participate (and, let’s not lie, so that mommy could have a cocktail) and I was surprised to find that I actually missed nursing him and was anxious to get him back on the boob – not only for him but also for ME. If I had such a strong reaction to skipping a couple of feedings I can’t imagine how I will manage when I have to stop all together. I know that eventually my pain will progress to the point where it is the right decision, but I’m just not ready!! (And even though I know I’m doing everything I can and formula is fine and blah blah blah but I must admit to a little bit of mama guilt over having to stop before either of us are actually ready).

Any advice on how to deal with this? Or maybe you (or your commenters) might have some parenting tips that would make it easier to manage baby care with chronic pain so I can put off the inevitable just a little bit longer?

~RA Mama~

First all, and I hope you know this, but you are a Grade A Rockstar Badass, m’lady.

Second of all, it’s hard…nay, downright impossible to define being “ready” to wean. Some women absolutely have a set timeline in their head (I will breastfeed for X number of months/years) and manage to make to that goal and remain completely, utterly fine with saying “all done” and stopping. A LOT of us, though, have a squishier time with it. I always wanted to nurse until a year. I only managed to last that long with my third baby, who I then planned to wean this month (thanks to travel, crappy supply, his growing disinterest)…only to freak the EFF OUT once push came to shove because *I* wasn’t ready. (In other words: I came home from the trip, woke him up from a nap and shoved my boobs at him. So we are still nursing.)

So I completely, totally feel you. You can logic the whole thing out in your head — formula is fine, my health is just as important, happy mama makes a happy baby, etc. — and still basically feel like crap about it. About the unfairness of it. Especially if you feel like it’s your body that is somehow “letting you down.” (Either for a chronic condition, supply/growth issues or some other crappy medical issue that precludes breastfeeding.) Even though your body just got done doing something mind-blowingly amazing by conceiving, carrying and birthing a human being. It still doesn’t feel like “enough” if there’s still something you were hoping it would be able to do postpartum. (And if there’s anything women seem to be especially great at, it’s not accepting our bodies and/or their limitations without turning it into a degree of “failure.”)

This isn’t really advice, obviously. Just more of a nice back rub while I nod and sympathize because yeah. What you’re going through sucks and what you’re feeling is NORMAL. So normal that even those of us who aren’t in your exact situation can still probably find something in our own breastfeeding adventures that feels (at least emotionally) similar.

The best advice I can give is to take nursing one day at a time. When I was nursing Noah and things were a disaster, I set very tiny mental milestones for myself. I will nurse him tomorrow. I will nurse him until the end of this week. I will make it to four weeks. Then six. This might not be possible for you due to the unpredictability of your flare-ups, but it might help to set super-short, possibly achievable goals for yourself rather than looking longingly and wistfully forward at six months or a year or other possibly not-doable lengths of time.

Try as hard as you can to not view every day of nursing as potentially “one of the last,” but as a major, awesome accomplishment. Don’t let the inevitable weaning dominate your thoughts and keep you from enjoying the days you have. Because weaning will happen when it has to happen. Weaning will ALWAYS happen when it has to happen, for every mom and every baby, be it two weeks or two years. And it can be hard and emotionally/hormonally challenging at either of those points, so be kind to your body AND your brain. It’s okay to stop. It’s okay to be sad.

As for continuing to nurse while managing RA symptoms, well, jeez, there’s a pathetic dearth of solid information out there, as I’m sure you’ve already researched. Everything I found basically says the same basic thing: That there’s a pathetic dearth of solid information. I found a first-person account of a mom who nursed for four-and-a-half months, albeit with a lot of pain. The National Rheumatoid Arthritis Society in the U.K seems to have the most thorough briefing on breastfeeding with RA that I could find. (Though note it hasn’t been reviewed or updated since 2009, however I’m not seeing evidence of any major breakthroughs or studies on RA meds and breastmilk since then either.) And now I’m thoroughly stepping too close to the “do not ask ME, ask your doctor” zone, since beyond a few weeks post-C-section doped up on breastfeeding-safe Percocet and Ibuprofen, I’ve just never had to deal with anything like what you’re going through.

If you have to stop breastfeeding, you know it’s okay to stop breastfeeding. There may not be a magic breastmilk-safe bullet for your physical pain; there may also not be one for the emotional sadness you feel when you stop nursing. Besides, probably, the passing of time and the realization that there is SO. MUCH. MORE. to motherhood than nursing. Including feeling good and healthy enough to chase your toddler around and pick him up for hugs and push him on the swings and take him to the zoo and tickle fights and pillow fights and dancing in the kitchen and on and on it goes.

You’ll be able to do ALL OF THOSE THINGS when you’re taking care of yourself and taking your necessary meds. And once again, your superhero cape is looking quite impressive, Mama.

Photo source: Hemera/ Thinkstock

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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39 Responses to “Breastfeeding & Rheumatoid Arthritis”

  1. Kim Aug 22 at 11:36 am Reply Reply

    Seconding the Rockstar part – you are a great mama, and both you and your little one are going to be just fine.
    You got the colostrum down him, he’s had a great start. And really? Line a bunch of kids up, heck line a bunch of non-hungry babies up, and no one could tell you which ones were breastfed, which ones coslept and who cried it out. These decisions seem so huge (and they are a big deal) but kids still grow up. A happy, healthy mama will make far more of a difference than breastmilk will. Best of luck to you, and congratulations on your baby!

  2. AmyRenee Aug 22 at 12:38 pm Reply Reply

    I would highly, highly encourage you to call the Infant Risk center with the name of your medication and discuss it with them. Dr. Thomas Hale runs the program from Texas Tech and he has researched hundreds of medications and whether they enter into breastmilk and at what levels. A lot of medications say “not recommended for use during pregnancy or breastfeeding” simply because they haven’t been studied by the manufacturers, not because there is a known risk. The website is http://www.infantrisk.com and the phone number is 806-352-2519. I have called them with both of my kids at the recommendation of my IBCLC and they have been extremely helpful. And if you can’t find a medication that works for you and is compatible with breastfeeding, you are still a rockstar, as Amalah said! Good for you!

    • Debra Aug 22 at 1:52 pm Reply Reply

      I second the recommendation for contacting Dr. Hale’s website. I’ve known quite a few women who were helped.

      • Meredith Nov 11 at 11:17 pm Reply Reply

        Yes, I have RA and breastfed while on Enbrel at the recommendation of my Rheumatologist based on Dr. Hale’s research. You should definitely discuss breastfeeding and RA with multiple RA docs.

  3. Kelly Aug 22 at 1:07 pm Reply Reply

    I just want to let you know that your not alone. Things will work out and we as moms are allowed to feel good, healthy, and strong. Here is how I know…

    I have Ankylosing Spondylitis which is a form of some pretty nasty arthritis. I have had numerous back surgeries, multiple doctors and of course medications. I am also the mother of two beautiful girls. My oldest is 2 I suffered a very long literally back breaking limping along pregnancy and would do it all again to have her smiling face in my life, even the days I want to throw her out the window! I hadn’t been diagnosed when I had her and yes 6 weeks post partum seems to be the magic week for our arthritic disease to rear its ugly head… I couldn’t move or get out of bed. My husband had to hold her up to my breast so I could feed her. I couldn’t carry my baby down the hall or hold her when she cried. I would go through flare ups not knowing what was happening. I nursed her for 8 months.

    My youngest is 4 months and I was diagnosed before this last pregnancy. I was on prednisone as needed as I carried her fairly comfortably. And 6weeks post partum I was limping again. I recently made the decision to start Enbrel. I stopped nursing and had a lot of guilt. I thought I was being selfish choosing myself over my baby. I am not. I am choosing to be an active mommy, to chase my girls around the house, to be able to bend down and blow raspberries on her belly. I chose life. I am happy, my toddler is a pain but I can chase her down the street when she runs from me, my baby is in my arms and she sees a smile on her mummy’s face. I have arthritis but my girls don’t have to deal with it too. I hope this helps. 

    You are not alone. You will get through this. Your baby loves you, breast or bottle you are mommy.

    • Skye Aug 23 at 5:58 pm Reply Reply

      “I thought I was being selfish choosing myself over my baby. I am not. I am choosing to be an active mommy, to chase my girls around the house, to be able to bend down and blow raspberries on her belly. I chose life. I am happy, my toddler is a pain but I can chase her down the street when she runs from me, my baby is in my arms and she sees a smile on her mummy’s face. I have arthritis but my girls don’t have to deal with it too. I hope this helps. ”

      made me tear up, you are 100% right. I also have RA and breast fed for 2 months and just stopped last week. I did feel selfish but I know I need to be healthy to take care of my little one I rather be able to hold him and care for him then be miserable without medication.

  4. Jimmie Aug 22 at 2:16 pm Reply Reply

    I just wanted to tell you you are not alone! I could have written this exact same post a year ago. I was diagnosed with RA in April 2010. Started trying to conceive right away, at the advice of my rheumatologist, who basically told me to ‘shit or get off the pot’ if I wanted to have kids, lol. Pregnant in July 2010, and was fortunate enough to experience remission almost immediately. My beautiful daughter was born March 2011, and my postpartum remission lasted until 8 weeks pp, when I suddenly had trouble lifting my baby out of her crib and bouncer seat. We were enjoying a perfectly awesome nursing relationship up until that point, and I was CRUSHED when I knew I had to start taking RA meds. 

    I was in such pain, there was no weaning off. We had to stop cold turkey. Fortunately, my baby took right to formula and the bottle, but unfortunately, my hormones went absolutely crazy. If you can wean down at all, do it! Try to avoid the cold turkey thing, because I was an absolute hot mess for at least a month after stopping BFing. I would cry (bawl, actually) for no reason at all, and I felt like such a failure to my daughter, even though I knew in my heart that I was doing what I had to to be able to take care of her.

    If you ever want to talk more, I’d love to have a buddy who’s going through the same thing. My email is kennedyj82@gmail.com.

  5. Cara Aug 22 at 3:46 pm Reply Reply

    I would urge you to get a second opinion on meds. I also have RA, though it sounds like mine is a lot more moderate, and there were meds I could safely take while breastfeeding (and even the first two trimesters of pregnancy) to help with the inflammation. It’s not the good stuff for sure, but it might be enough to take the edge off and nurse a little longer, of you want. I’ve been lucky and the hormone shift seems to have pushed me even further down the scale to mild, so Aleve has been enough to get me through. But, make sure they know you really want to nurse and have explored the options, because just telling you no meds at all is the default safest way.

  6. Steph Aug 22 at 3:54 pm Reply Reply

    Having been in almost this exact situation last year due to a very similar reason (lupus arthritis, but same pain pattern), I totally understand. I limped around at night and sometimes had to have my husband pick up my daughter from the crib for her night feedings when my hand joints were too painful, because I was afraid of dropping her. I was able to do a couple of short prednisone courses (safe during bfeeding) which helped get me through a few rough patches, but I’m guessing you’ll have to be on something stronger and contraindicated (methotrexate, etc). If it helps, one of my worst points was right around 6-7 weeks, but then I experienced another hormonal remission for a few months after that. I made it to 14 months (shockingly) before weaning using a combo of prednisone/plaquenil, the very short view advocated above (today/tomorrow goals) and accupunture, which helped tremendously. Good luck!

  7. Brooke Aug 22 at 4:53 pm Reply Reply

    Although it is true that there is a lot of misinformation about medication and breastfeeding, (most) drugs to really treat RA are absolutely not compatible with breastfeeding. It’s worth talking to your doctor for sure, but there may not be any good options.
    Our daughter was older and still nursing when my wife was diagnosed with RA. Having to wean her was very hard emotionally. Adjusting to the reality that more children are no longer an option was also hard.
    I have no advice, but I’m sorry to hear you are going through this. Nursing is really a wonderful and important thing, but it isn’t the most important thing. Treasure the time you have nursing and try to wean slowly to help moderate the hormonal issues. And I imagine it will suck when you are done nursing but not yet up to strength on your meds, so be gentle with yourself.

  8. IrishCream Aug 22 at 7:41 pm Reply Reply

    No advice on RA or earlier weaning, but I wanted to say how impressed I am that you’ve been managing to pump and build up any kind of supply in the freezer! Those first six weeks are exhausting under the best circumstances, and pumping on top of all that…way to go, mama.

    I’ll also reiterate what an earlier commenter said: time has a marvelous way of putting these struggles into perspective. It’s easier to look back and say, “hey, I didn’t do so badly after all,” when your teeny little baby has turned into a healthy, happy big kid, because it’s much clearer how little your decision affected your child in the grand scheme of things. It’s usually tougher on the parents than on the kids…your son will not give a hoot how you fed him!

    Good luck and hang in there.

  9. annemarie Aug 22 at 8:08 pm Reply Reply

    I’m a doula in Canada and one of my required readings included a section on RA and breastfeeding, which I read carefully because I had a client with RA. Dr Jack Newman is an expert and breastfeeding activist, and in his section on RA, he says that steroids and NSAIDs are definitely safe; his opinion is that gold and hydrochloroquine are safe (although the situation should be monitored), and that etanercept and infliximab have very large proteins that don’t get into breastmilk, but mothers are told they need to wean to take them. Here’s his website: http://www.breastfeedinginc.ca/index.php
    Definitely do some more research! I hope this helps you!

  10. Alicia Aug 22 at 8:43 pm Reply Reply

    Another mom in the same situation, letting you know it’ll be okay. DD was 6 months old when I was diagnosed with Multiple Sclerosis and I had to stop exclusive breast feeding immediately. At the time the (horrible, life-altering) diagnosis didn’t bother me. Having to stop breast feeding when it was going so well and I planned to go a year totally devastated me. And you know what? You can get used to anything. It’ll take a few sucky days and then it will be your new normal. And your boy will be more than fine. My daughter was too. Good luck!

  11. Sarah Aug 23 at 12:11 am Reply Reply

    Hi,
    I have psoriatic arthritis (arthritis with skin probs). I had major problems with breastfeeding after I had my daughter in Feb, 2011. I went to the specialists of specialists in Vancouver. Finally I had to give up and go back on meds. My docs basically said that it was better to go back on my meds and be fit to take care if both myself and my daughter than be off them and basically a wreck. Inflammation will damage your joints. Think of it as you might be weaning now but being at your best, you will be able to enjoy your baby much more as an active mother.
    All the best to you! You are not alone. Have you thought of contacting some groups for mothers with arthritis? Maybe finding a support group would help.

  12. claire Aug 23 at 2:21 am Reply Reply

    No advice, but just wanting to say a massive ‘you rock.and are awesome’ to the op and commenters here. You’re all amazing!

  13. Irene Aug 23 at 6:00 am Reply Reply

    Just adding another medication recommendation: I have psoriatic arthritis (presents very similar to RA), and I was able to continue my medication throughout pregnancy and breastfeeding – my daughter just turned 1. I’m on sulfasalazine/salazopyrin, with NSAIDs and paracetamol/acetaminophen as needed. I had my medication checked by more than 10 different medical professionals, and all agreed that the existing literature for this combination shows little or no risk during breastfeeding. I still have a lot of pain and stiffness, but it is definitely worth asking what your other medication options are. Good luck, and congratulations for making it this far!

  14. Sara Aug 23 at 9:21 am Reply Reply

    I second Claire’s comment. I am in awe of all of you – your babies will remember your giant hearts long after you’ve stopped nursing.

  15. Laura Aug 23 at 3:50 pm Reply Reply

    RA Mama, you are exactly who formula was designed for. You deserve so, so much credit for going through so much to conceive your son and get him off to a great start. He needs you as healthy as possible much more than he needs you to beat yourself up about breastfeeding for a sufficient length of time. (And the comment to ask a doctor is well-meaning but I think a bit off — you do not want to put a baby on any quantity of a drug that impairs immune systems and damages rapidly-dividing cells. There’s no way that’s safer than formula.) If you want to try something other than cold turkey weaning, you can try having him nurse for just a few minutes on a side and then switch him to a bottle. He might be okay with it, he might not. If it works, he still gets all the closeness and other benefits of breastfeeding, but you start telling your boobs to make a little less milk each time. Wishing you the smoothest transition possible. Guilt and sadness are understandable, but I think from reading your letter you know it’s time to go back on meds and you should do so with as litle beating-yourself-up-about-it as possible.

    • Laura Aug 23 at 3:52 pm Reply Reply

      Caveat: I’m not slamming Irene’s comment with my consult a doctor comment, I’m just guessing that you are on methotrexate and/or a biologic, which I know more about than the perhaps milder drugs she mentioned.

  16. Celeste Aug 23 at 4:16 pm Reply Reply

    I’m 43 & was diagnosed with RA at 22, by my early 30s I was on heavy duty meds — & went off them to have my son, then my rheumatologist said that there was some recent research (this was 2005) that reccomended eliminating gluten to lessen inflammation.  I was sceptical (to say the least ), but went gluten free – and it worked?!  I can have gluten occasionally now, but if my hands & knees start to ache I look at my week and usually see I’ve had too many sandwiches or too much pasta.  When I was nursing my son would actually get eczema on his face if I had too much gluten – so there was extra reinforcement to maintain the gluten free diet ;) I’m grateful that the RA is mostly manageable with over the counter meds, and although my kids don’t need as much physical care now – I certainly still need lots of energy. 

    And on the breast feeding note, my eldest is adopted & she only had formula, and she’s by far the healthiest kid I know. Although I nursed my son 18 mths or so, he caught every cold, had tons of ear infections and spent all winter with a runny nose. So although breast milk is supposed to be best, formula really is fine — and I think our daughter’s great relationship with her dad, had its roots on his always being just as able to meet her needs as I was, while our son would NEVER take a bottle — despite my desperate attempts. So bottles have some good points too. 
    Congrats on your little one !! 

  17. Katie Aug 23 at 4:33 pm Reply Reply

    I agree with all the comments! You moms are awesome! While on my own breastfeeding journey, I found this article and was somewhat comforted: http://www.theatlantic.com/magazine/archive/2009/04/the-case-against-breast-feeding/307311/

    While breastfeeding is incredible, we put so much pressure on ourselves to be “perfect” moms that we are setting ourselves up for failure. I’m not trying to ignite a breastfeeding vs. no breastfeeding debate. There is no doubt that breastfeeding is beneficial. I’m just hoping to pass along an article that helped ease my own mommy guilt.

  18. Lisa Aug 23 at 4:54 pm Reply Reply

    I don’t have experience with RA so I don’t have any advice. But as a fellow new mom (my daughter is 3 months old) I want to reiterate how awesome you are. I recently went back to work and I was in tears so many times in the weeks leading up to the transition. I felt like I’d never be able to handle it and that I would spend my days missing my daughter horribly and being miserable. Every time I talked about it with my husband had me sobbing. Then the time came and I had to suck it up and it turned out to be not nearly as bad as I had imagined in my head. Actually, I felt some relief that there was no longer this big unknown hanging over my head regarding how I was going to handle being away from my tiny baby. She’s doing great and so am I. I think that anticipating a big change like this can often be worse than the actual transition.

  19. Suzy Q Aug 23 at 5:06 pm Reply Reply

    Such awesome, wonderful moms on this thread! You are ALL rockstars and your babies are lucky to have you.

    • Isabel Kallman
      Isabel Aug 24 at 12:02 am Reply Reply

      Yes, EXACTLY! Thank you all for the wonderfully supportive, intelligent and informed comments. I am in awe.

  20. Shannon Aug 23 at 9:59 pm Reply Reply

    I don’t have too much more to add to the chorus of awesome here (you are a SUPERSTAR, as are all the other commenters), but I did want to second the recommendation for Dr. Hale’s website. I had to do 5 weeks of an intensive anti-cancer treatment starting when my daughter was 3 weeks old and there was no research on breastfeeding and the drug I was on, except one case study Dr. Hale did. I emailed him about it, and he actually emailed me back himself, he is that awesome.

    One of the crappiest things about the kind of situation people like us are put in is that it SUCKS to have to stop breastfeeding when everything is going well. It tore me to bits that my daughter LOVED the boob, my supply was awesome and I never had a shred of pain with latching or anything, and yet we had to stop with no options for weaning to just night nursing or other things that other mamas might be able to try. Honestly, at times I cried harder about not being able to breastfeed than facing cancer. The hormones, the emotion, all of it really took a toll on me (Since our situation was different and short-term, I planned on pumping & dumping through the month of treatment, but when I ended up in the ER with mastitis the second day, I had to face the reality that this plan might not have worked out for us. It eventually did, but the emotions were probably similar to what you are feeling).

    Now that my daughter is over a year, I realize how right everyone else is about it not mattering how the baby is fed, but it’s so hard to see that when you are in the middle of it. Hugs to you, mama.

  21. AmyRenee Aug 24 at 9:24 am Reply Reply

    A logistal suggestion: if you feel it’s only a matter of time before you have to start formula feeding, try swapping out one nursing session a day for you pumping and your husband giving him a bottle of formula. Maybe the dinnertime nursing session, or first thing in the morning – whatever works for you. That way you can freeze the milk you pump to stretch out the amount of time you can give him breastmilk from the freezer stash, and you have some time to find a formula that agrees with him. Most babies are fine with just a “regular” formula, but it would be better to find out now, rather than have to go cold turkey into formula only to find out that the first one you try makes your baby puke or he won’t take it. We had to give my son one bottle of formula a day while I was on a business trip and I was so worried it was going to be a disaster, and now it’s a HUGE weight off my chest knowing that if I have to I can use formula when necessary, and my son is just fine. You can hit up your ped for samples, that’s what they are there for.
    And it’s ok to cry, it’s ok to be sad about losing your nursing relationship if that happens. And if the sadness lasts, see a doctor/therapist/councilor about it, don’t write it off. Don’t forget, you will always be a good mom for FEEDING YOUR BABY, no matter the method.

  22. Jamie Aug 24 at 9:26 pm Reply Reply

    I am so glad to have read this! I have psoriatic athritis and am so thankful for biological medicines. They have made a world of difference in my life in terms of pain and movement. After my second child was born, I had the worst flare up of my life and really was dedicated to nursing. At 6 weeks, I was sobbed because my arms literally couldn’t hold my baby. I stopped and began Humira immediately. My baby was OKAY! I had to let go of my own guilt and sadness and realize there is zero shame involved. I’m expecting our third now, so obviously had to go off the meds. I am mentally preparing myself to let go of that breastfeeding guilt and be okay with formula- a healthy mother is a good mother- and our baby needs us in good shape. Formula works too! And I need medication to live a normal quality life.

  23. Autumn Aug 24 at 11:28 pm Reply Reply

    I’m a physical therapist mom who is working on weaning her boob CRAZY one year old.  I’ve served my time and I want to wear normal bras… but I also work with older patients with RA.  Patients who have suffered for so long because they didn’t have the medications that are now available.

    I know it seems so immense now to wean, especially when breastfeeding is going so well.  But fast-forward 25 years, and then how your fed your amazing baby won’t matter as much.  but being able got get on the floor with your grand baby. . . priceless.  

    Take care of you, so you have a great future for your kid (or kids!) and your grand kids.  My mom says the reason she had us was then she could have grandkids:)

  24. ~RA Mama~ Aug 25 at 8:04 pm Reply Reply

    Amalah ~

    I really don’t know how to thank you for responding to my letter. I’m happy to report that my son just turned 12 weeks old and we’re actually still hanging in there with the breastfeeding – and you’ve helped me realize that I’ve already made it twice as long as I thought I would!!! Unfortunately, my RA symptoms are continuing to get worse and I know the inevitable “end” is near, so your advice is spot on: I really need to stop obsessing about the end and try to enjoy the time we still have together. So that is what I plan to do.

    You’re very right that there is a totally pathetic dearth of solid information about RA and breastfeeding. I’ve been trying to be some small remedy to that problem by sharing my own RA & breastfeeding (and pregnancy) experiences on my own blog (http://fromthispoint-forward.blogspot.com/). But I hope you realize that just by publishing this column you’ve done something amazing for the RA/autoimmune community – there are already more personal stories shared in this thread than I managed to find in nine months of pregnancy-induced crazy research. And since this is a well-known parenting website, I’m sincerely hoping that the mamas who come after me will have an easier time finding information and support. Because of you. ~;o)

    Thanks ever so much.

    Love,
    ~RA Mama~

    P.S. Also, thanks SO MUCH to everyone who shared their stories in this thread!!

    • roo Aug 25 at 11:06 pm Reply Reply

      This is great news! Also– I really should read the whole thread before commenting.

      Congratulations!

    • Bear Aug 26 at 1:41 am Reply Reply

      Your son totally lucked out in the Mama sweepstakes, clearly. Best of luck to the both of you.

  25. roo Aug 25 at 11:02 pm Reply Reply

    You know, when I started reading I thought I might comment on some shared experience I’ve had with medications that contraindicate breastfeeding. 

    Then I started reading these other comments (one in particular), and started thinking about my mother, who has some variety of RA that, so far as I know, hasn’t been completely diagnosed. She started having pain when she was 18.

    I think there have been many strides made in being able to manage long-term pain and the other effects of RA since I was little. Back then, there were many times she had to tell I couldn’t sit in her lap, and she never could sit on the floor to play.

    We’re very close, and she found other ways to spend time with us girls, but I think if you have a chance to take something that would help you move the way you want to move, you might find there are things you get back that might make up for the pain of what you lose by the trade.

    Good luck, and congratulations on your new family. You’re so thoughtful, it’s hard to imagine you won’t make the right choice for you and your baby.

  26. MinCO Aug 26 at 6:11 pm Reply Reply

    So my baby is 8 years old now and I was fortunate enough to have him before I was diagnosed with RA. However, I had a difficult pregnancy which resulted in him coming 9 weeks early. We tried and tried to nurse, but he never took, I never let down, who knows. I finally had to stop trying and just pump. I pumped as long as I could then had to stop way before I wanted to. At the time stopping trying to nurse then stopping pumping was really hard and frankly sad. It was not how I wanted to mother. However, looking back now 8 years later I know I did everything I could at the time for him and for me. You both need to fit into that decision because if you are in pain all the time, it is really hard to be a mom in the other ways that are so important too. So I guess what I am trying to say is right now the decision sucks and it hurts, but down the road, you’ll know you did what you could and be content with your decision because there are so many other ways to be a good mom. Good luck and don’t forget you in the decision because you matter too.

  27. Amber Aug 29 at 6:45 pm Reply Reply

    Good for you for getting as far as you’ve gotten!  I have nursing-induced RA (we think it’s hormone related?) although not nearly as painful as yours.   I’m amazed at what you’ve done here already!

    I just wanted to share my experience… after my second baby, when the pain was so bad I couldn’t hold her, someone made a couple diet suggestions that worked.

    I won’t go into it all, but upping my Omega 3′s was the important factor.  And I did that most effectively by switching to butter instead of margerine and (biggest deal maker) switching to grass fed beef.  Sounds crazy, but for me, I went from not being able to hold my baby to actually having 0 pain.  It was so incredible, I had to share.  Maybe it could lessen the pain enough that you can live with it, or control it with a less extreme drug.

    Either way, enjoy your baby.  Being able to love on your baby and hold him and enjoy him and play with him is WAY more important than what goes in his mouth.  If breastfeeding gets in the way of your enjoyment of your baby for whatever reason, that’s not the healthiest option.  A happy mama is important.

  28. Lauren Aug 30 at 1:26 am Reply Reply

    Let me start by saying, that if weaning is the best thing for your health and the health of your family, please don’t feel any guilt. That said, I have 2 recommendations if you DON’T want to wean.

    1) http://toxnet.nlm.nih.gov/cgi-bin/sis/htmlgen?LACT – Lactmed. Please look you your medications, and print your findings and bring them to your Dr. Most rhumatologists have no idea what to do w/pregnant and lactating moms. I have JRA, and my rhumatologist didn’t think it was safe for me to take advil while nursing until I told her that the hospital gave it to me for my cesarean.

    2) Try manipluation. It took us almost a year to conceive, so I hear you about the long time off the meds. The only way I got through TTC, prenancy, and the last 11 months of nursing has been manipulation w/the DO at my rhumatologists office. If your office doesn’t have a DO, find one. It makes the symptoms so much better.

    Best of luck, and I hope we get an update from you.

  29. Chez Aug 30 at 2:53 am Reply Reply

    I have a similar story. I have ra and had to give up bf at 6 weeks due to pain and meds. I’ve since read many posts and talked to my rheumy and while at the time I had to start methotrexate I will soon be on a biological which my rheumy will support its use during bf. forgive yourself and let go of guilt. It’s helped me knowing that I can have another go. I still comp fed the whole time so bub always had s bottle. Next one will prob have to as well. :)

  30. Katherine Sep 09 at 1:23 pm Reply Reply

    I have dealt with very similar circumstances as I have battled with Multiple Sclerosis since I was 15 years old. I had a terrible time with my MS during my first pregnancy, but still delivered a healthy baby girl when I was 18. I was intent on nursing her for at least 6 months, but after 3 weeks, I was forced to go on medication to treat the relapse I had been overtaken by. She went from boob to formula, literally overnight before she was even a month old. When I was 30, I had my second child. My MS actually went in to remission during the pregnancy this time and my son was able to nurse until he was about 3 months old before I had to go back on my medication this time. As hard as the changes to formula were, please know that children would rather have a functional mom, than dealing with the pain and difficulties brought about by not tending to your own needs. My daughter is now 14 and an honor student and 3-sport athlete at a very competitive high school. My son is a happy, energetic 2 year old who is bright and has a terribly sunny disposition. Formula and early weaning from the boob didn’t hurt them, and me being able to be as “normal” of a mom as possible helped them even more, and in turn helped me too.

  31. Rachel Jan 02 at 6:03 pm Reply Reply

    THANK YOU for this thread, everyone. 

    I have a different perspective that might be helpful to you. 

    I breastfed my daughter (now 6) for 14 months. I was determined to let her nurse for as long as she wanted, and in the end she weaned herself. 

    I regret nursing her for that long.

    The pain I felt while breastfeeding was unlike anything I’d experienced before–worse than childbirth. When she was a newborn, I used to stuff washcloths in my mouth so no one in our apartment complex could hear me scream when she latched on. No one told me that wasn’t normal. When we finally worked out the latch problem, the pain in my arms, hands, shoulders, and back was so severe that I was afraid I’d drop her. (I never did.) For 14 long months, nursing was uncomfortable at best, agony at worst. (We managed to bond extremely well anyway.)

    When I look at her baby pictures now, the first thing I remember is how much pain I was in when each photo was taken. 

    She was a happy, happy baby in perfect health, and I was well schooled in the statistics you hear that tell how good it is to breast feed. At the time, I thought it was worth it. 

    When she was 3, I was diagnosed with fibromyalgia. It’s notoriously difficult to treat, and it took me years to find a doctor who actually believed me when I told him how much pain I was in. He put me on some pain meds, and I was just beginning to feel a little better when I found out I was unexpectedly pregnant with a second child. My doctor kept me on smaller doses of these medications during my first 2 trimesters because he was concerned I wouldn’t be able to handle the pain without them. He was right. When I was weaned off them for the last trimester, the pain was horrific. I had to use crutches just to get around our apartment. I would have used a wheelchair if there had been room for one. I had to have help to get in and out of bed and the bath, and my little girl helped me get dressed each morning. Unmedicated childbirth was not much worse than the pain I had all through that last trimester. 

    When my son was born, my midwife and a lactation consultant encouraged me not to breastfeed–said she wasn’t sure I could handle the pain. I had no money for formula OR medication, so I did it anyway. We were so broke that I didn’t feel like I had a choice. 

    I breastfed my son for 10 months, and I regret that. I’d have cut him off much earlier if circumstances had allowed, but we were in the midst of a cross-country move that took months to complete, and I didn’t want him to have to transition off the breast (which he LOVED) while every other part of our lives was also transitioning.

    Every nursing session was painful. In between was painful. Everything was painful. I became depressed for the first time in my life. My (new) doctor told me to tough it out because “you look fine” (to be fair, she’d never met me before, and I never even came close to being a danger to myself or my children.) A second doctor prescribed an anti-depressant that didn’t help. I didn’t like my 9 month old much. 

    I finally weaned him at 10 months, after we found a place to live and our time of dramatic family transitions had finally let up. I wish I had done it much earlier. I went back on my pain medicine, he was thrilled with his bottle, and for the first time I started to actually like him. 

    My problem wasn’t post-partum depression; that was never really severe, and it disappeared overnight once the pain was lessened. I was simply in too much pain to be able to bond with anyone, let alone the baby whose needs were directly responsible for the pain. 

    I’ve always had a wonderful relationship with my daughter, but I wish now that I’d weaned her early, because I can’t remember her babyhood without also remembering how much pain I was in at each stage. I wish I had weaned my son much earlier, because I was in too much pain to enjoy most of his first year. I’m glad–so glad–that I gave them the benefits of my milk for so long, and I was a wreck  when I finally weaned my son. But looking back, I don’t think it was worth it. 

    Just something to keep in mind. 

  32. val Jun 20 at 11:26 pm Reply Reply

    I know this post was a while ago, I would like to share for future moms.
    I have psoriasis and on my third trimester with my first child I started experiencing joint pain in my toes. I breastfed for 16 months. I got pregnant even before I weaned my first baby. This time joint pain spread to fingers, hands, knees, hips, toes, ankles… swollen and unbendible. My second baby was allergic to everything (not anymore) so formula was out of the question. I cried everytime I needed to move. Apperently I have psoriatic arthritis.
    Finally what made it tolerable and not that painful is: double dose of joint supplement, prenatal vitamin, 3-6-9 omega oil supplement. Hot shower in the morning to loosen the joints (I literally had to roll off the bed, could not get up). This is my method, not doctor approved, it is not a cure, I am just sharing that there are supplements that could give you that extra time with your little one. I breast fed my second baby for 14 months. But I am a high pain tolerant person.
    After I stopped breastfeeding, my joints got a little better. I did stop all supplements though. I hope I gave someone a little help. This is awful pain. Mothers that breastfeed with arthritis are heroes. They give their child the best while ripping it away from the themselves.

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